What is the Hardest Part of Living with Illness? Your Responses!

What is the hardest part of living with a chronic illness? Well, it depends on who you are asking, what time of day you are asking, and a million other factors. Yet, we all have so much in common and we can understand the challenges of the friend beside us even if we don’t deal with it ourselves. We all feel “called” to certain things, and not being able to do them–from homeschooling to making dinner–is difficult when we don’t feel we can do what we, and others, expect from our self. And the fact that it is invisible . . . well, that makes many of the struggles even more painful as we feel we must justify a housekeeper or a parking placard.

We asked you, “What is the hardest part of living with illness?” and here are your responses. As you read through them, be sure to send up a prayer for our brave participants who shared their hearts.

“One of the hardest parts is that chronic illness seems to present an opposite picture of my character. For example, I am fairly organized, love keeping my home running smoothly, making home cooked food, and having a reasonably tidy house. Because I do not have the capacity to keep my house very tidy at times and unable to clean very much, people have judged me as being lazy and unorganized and this really has hurt me very deeply.” Lee, chronic fatigue syndrome

“Missing out on so many activities because of my illness. Your healthy friends say to you ‘let me know what I can do for you,’ but you don’t hear from them. You make the most of the days that you have because you know it is a gift from God and it is to be treasured and you do not when it will be gone.” Carla, multiple sclerosis, chronic pain

“Having more dreams than I have physical ability. I’m learning how to chase my dreams in different ways.” Kathy, mixed connective tissue disease, diabetes, and more

“People forget and assume you should be doing more than you are. Or you have to explain over and over again why you need to space out the tasks you take on, over a longer period of time to allow for flare ups and to keep from really crashing. Also, lack of sleep associated with uncontrolled pain and neurological symptoms takes a heavy toll on my emotional state and relationships.” Sherri, lupus, fibromyalgia, rheumatoid arthritis, Sjogren’s

“The hardest part of living with a chronic illness is not being able to do the same things other people your age are doing. I’m only 24 and have had this illness since I was born. I’ve never been able to run and play sports like the other kids my age. I always had to sit on the sidelines and watch, which wasn’t all bad. It was fun to sit there and cheer for my friends, but I can’t deny feeling a little left out.” Erin, multiple hereditary exotoses

“Friends and family think you are doing well cause you look good from the outside, but your body is hurting every day from the inside where no one can see.” Evelyn, chronic pancreatites

“Personally, I am not one to talk openly about my mental illness. Of course there is stigma surrounding mental illness and that impairs communication, but that is not why I “choose” to remain silent. I don’t want to call attention to my illness for fear I will be considered “weak” yet my greatest need is to be able to talk about it without fear of judgment. I could, however, explain any misconceptions about my particular illness and about chronic illness in general if I felt “safe” enough to express that which is kept hidden. I feel I only add to the misunderstanding of living with invisible illness because I am hesitant to talk about it. I want to help others better understand invisible chronic illness, and in doing so, I think that I will feel more secure with my own.” No name given

“There are many hard things about living with chronic illness. What I consider ‘the hardest’ changes from time to time, but one thing that’s really bothering me right now is the looks I get when I pull into a handicap parking spot with my state-issued PH plates and get out with my three kids and walk into a store. I do NOT LOOK SICK in any way and I feel like people are judging me, thinking I’m abusing the plates, maybe questioning if they are even mine. They have no clue about the pain I’m feeling with every step, the exhausted effort I’m putting forth simply to get through this trip to purchase groceries to feed my family. They don’t know that even if I can make it into the store alright, that by the time I’ve checked out I’ll be staggering back to my van, ever-so-greatful that it’s close enough to the door that I can make it there without throwing up from the nausea and fatigue I’m struggling under.” Jennifer, chronic fatigue syndrome, fibromyalgia, endometriosis, PCOS

“I am 70 years old and really want to enjoy my remaining years. I have a handicap emblem for my car which I use ‘as needed.'” Jerry, peripheral neuropathy

“When we go somewhere like Disney I can walk almost normally first thing on the morning; my wife is not handicapped. People look at us, and have often commented as to why we feel we deserve to park so close, when they have to walk so far. Of course they are not around later as I slowly make my way back to our van. But the hardest part goes beyond the invisible illness to the fact that I own my illnesses. Diabetes, neuropathy and the related depression which require large amount of medications, and still are incurable and limit my former active life style. I have found that volunteering my time and efforts to help others deal with like problems has helped me deal with my own.” Name withheld

“Working, I’m in so much pain all the time, but working at a job really makes the pain go way up.” Cindy, arthritis, neuropathy

“It is hard to pick just one thing that is the hardest part of living with a chronic illness. I think loss is the hardest part for me. Loss of health, loss of the ability to move about freely, loss of friends, loss of the ability to work, loss of self confidence, loss of financial security.” Ruth, young onset Parkinson’s, fibromyalgia, osteo arthritis

“The hardest part, hands down, is having to deal with family members who don’t believe, who doubt and test and constantly tell you what you are experiencing isn’t real and you’re faking it. Then if you have a good day – heaven forbid you should have a good day! – and can do anything you normally can’t, it is taken as ‘proof’ that your illnesses are fake. It’s a lose-lose situation.” Sharon, arthritis, asthma, fibromyalgia, allergies

“The up and down of daily living. It’s hard to plan anything. You take one day at a time. You can’t think about what others are thinking, when they see you do things one day and then are bedridden the next. They do not understand. I do not understand. I do know that God’s unfailing love is there for me and my family continues to stand there for me. Praise God!” Carla, multiple sclerosis

“The hardest part is the invisible part. I have people say I can’t be sick as they can’t see it or that it is different from others. And they can get really uptight about it all. They don’t understand when fatigue just overwhelms me, I should be able to keep doing everything! HELP!” Lee, arthritis, fibro, migraines, headaches, asthma, IBS, etc

“The hardest part of living with an invisible illness, isn’t the fact that its invisible. I have a wonderful family and wonderful friends. If you don’t believe me, I don’t care. You do not make an impact in my life, you do not live with me, and you do not help support me. Anything that is said hurts, but is soon forgotten.” Christine, reflex sympathetic dystrophy, complex regional pain syndrome

“What hurts the worse is when my invisible illness allows me a good moment, and my son shows so much joy in that moment, and then the next moment I can’t even get out of bed. No two moments are ever the same, and even though I look like I could go out and play at any moment, my son will never know if my invisible illness is so bad that just coming to ask me causes me to snap.” No name given

“Being judged for what can’t be seen. I am overweight, so the standard response I get from people is if I’d lose the weight, I’d feel better. That’s like asking ‘Which came first, the chicken or the egg?'” Doreen, rheumatoid arthritis, fibromyalgia

“I think it is seeing people you haven’t seen in a while and them expecting you to be your old self.” Nancy, rheumatoid arthritis and tendonitis

“Having so many things that I would like to do and not enough energy to do them. The energy problem also affects my ability to be social and to have less isolation. I guess this is two things, not one, but the isolation is really hard.” Sherri, fibromyalgia, orthostatic hypotension, Hashimoto’s disease
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“The hardest part of living with a chronic illness is having to cut back on the amount of housework I can do. I had to cut back on activities that I used to such as church activities and not to mention being able to go on long trips and vacations with my family. But God has been good and He is helping to hang in there.” Vickie, fibromyalgia, panic and nerves eisorders

“I am 59 but look at least 10 years younger and I try to look my best at all times, so the hardest part of living with the invisible illnesses is my own perceptions of myself. Some days I feel almost normal and then I think maybe I am getting well. I look in the mirror and expect more of myself even though I am well aware of how I feel on many other days. I have a hard time balancing fighting for my health and leading as normal a life as possible, spending time with my husband, grandchildren, children, friends, run my home, wonder about having ministry influence, and yet accept where the Lord has me.” Sheryl, chronic myofascial pain, plantar fascitis, IBS, spinal curvatures

“I think the hardest part of living with an invisible chronic illness is that people don’t believe that you are as sick as you say you are. It took six years and many doctors and tests to finally get a diagnosis for my fibromyalgia. And just last year, I found a doctor that understands ALL of the issues that go along with having a headache all day every day. It’s bad enough when your family and friends don’t believe you. But, when the medical community turns their back on you and ignores you that really effects your self-worth.” Carrie, chronic saily headache, migraines, and fibromyalgia

“I have only been a Christian for seven years and I am glad that I have my firm foundation to support me during my rough times. I don’t know what plans God has for me, but I know that ‘He will use my pain to birth my passion’ as Beth Moore put it.” No name given

“I am 55, and older people actually tell me I look okay, even though I am walking poorly, or sometimes with a cane or walker. I get nasty comments when I park in disabled space, legally of course. Am a lot different person when I come out of store however–look and feel like someone else. Elderly don’t believe me when I say I collect SSDI for 5 years now, worked all my life, then disabilities much worse. Have bad days and worse, no one understands chronic pain, esp when you are under 60, have had juvenile RA since age 15, but only slowed me down a bit, always active until my late 40’s. Typical progression according to docs., not unusual to have other things added to bad bones and muscles. even church going do not understand my inability to go there, to drive much, or do simple things they can do. very frustrating. very lonely. I am a widow – have 4 grown kids and 5 grands. I see on and off.” Marjorie, juvenille rheumatoid arthritis, lupus other spinal probs, fibromyalgia, asthma, blood disorder, chronic pain

“I think the hardest part is probably that people don’t understand. You look fine, so they have expectations about how you should be able to behave, or what you should do, when they really have no idea how difficult things might be for you. If you try to explain, you look like you are making excuses.” Fiona, chronic back and neck pain

“The hardest part is to be left behind from my family. (Especially during the summer trips!). I am unable to travel or enjoy most activities, so my hubby takes the kids out to enjoy their summer. I’m left behind realizing how lonely it is to be so sick, a lot of the time! I can’t enjoy my beautiful children and see their smiles as they enjoy an amusement park, family reunion, etc.” Kelley, degenerative disk disease, endometriosis, severe joint pain, severe chemical and food allergies

“The hardest part for me is that my own adult daughter still thinks of me as being young and strong and I’m almost 57 years old; yet I feel like I’m 90. I’ve been a single parent since she was three years old and raised her without one penny of child support. She doesn’t understand the pain and exhaustion that I go through every day. I’ve had Fibromyalgia and Chronic Fatigue since 1991 which were both brought on after I was in a car accident. However, eight months ago, I became extremely ill and lost 40 pounds in 1 1/2 months. I had to go to the emergency room 4 times in one month and had 5 IVs due to severe dehydration. I still don’t have a diagnosis as to what was wrong and I underwent numerous medical procedures. I’m still recovering from the illness that had me nearly bedridden for two weeks straight. It took me five months to finally get an appointment with my primary doctor (I had to see nurses prior to that).” Barbara, fibromyalgia, osteo-arthritis, asthma, herniated disks, migraines, IBS, chronic fatigue syndrome

“The hardest part of living with invisible illness is slowly watching the World go by, and see people leave your life. The L O N G sleepless nights filled with prayer and innermost moanings to a God you can’t feel right now. Your memories of able-bodied days Your knowledge that your loved ones are tired of dealing with your illness and knowing you’re a burden.” Jill, 3 spinal surgeries, diabetes, epilepsy, gastroparesis, degenerative disc disease, ostioparosis, nuropathies, etc.

So, what can we do with all of the emotions? What do YOU do to get OVER those feelings of not getting everything on your list done, or frustrations of having to explain why your house isn’t clean? Remember Joshua 1:9: “Have I not commanded you? Be strong and courageous. Do not be terrified; do not be discouraged, for the Lord your God will be with you wherever you go.” How can we turn these emotions from discouragement and fear into strength and courage?

15 Responses to What is the Hardest Part of Living with Illness? Your Responses!

Wow, this was a wonderful post. I can relate to so many of you. For me, it’s mostly the sadness and still unexcepting that I can’t do the things I want and had planned to do at this time in my life. I’m turning 60 now, and my life has been stolen. I had thought it would be so different. Only pray that God will show me some purpose and plan for my future. Linda — Rheumatoid Arthritis, Osteoporosis , Gerd, Glaucoma

I find it difficult when others say, ”the Lord has a plan for your life”. Usually able-bodied Christians! As i see myself slowly get stiffer and am unable to do things i used to, i find praise hard. I know others are in a worse condition but does’nt really help either sorry andy

Oh, Andy…
I can relate so much. Everyone say that to me. I agree IT IS SO difficult to see how he could have a plan or use me while i’m still so bad. I feel like i’d have to be healed somewhat first. Then again, I know what He said to Jeremiah. Guess if it’s just leading one person that I wouldn’t have otherwise met, to the Lord and they ended up in heaven rater than hell….that would be purpose enough. But, that’s hard to handle, I know

Hi Linda yes it’s very hard is’nt it when people say things to help us feel better like ” Well that did’nt happen because the Lord has something better for you” etc. I have a Neurological condition like MS but even though i’m 54 i feel a lot older. Anyway God bless you Linda, you have things harder than me. it’s 11 o clock here in Liverpool so i better wheel meself to bed. andy

I don’t have chronic illness but rather chronic pain from cancer treatment. I feel I can relate to much of this article and the posts here. Many people don’t understand how I feel day to day. They wonder why I don’t work full-time anymore. Often say, “It’ll get better”, or, “remember Rom 8:28? God is working good through this”, etc. . . when it would be so much more of a comfort to hear, “I’m sorry you live with chronic pain”.

I look like a healthy 52 year old but my body more closely feels like 70+ on some days. There are good days and bad days. I know all too well that people who don’t have a chronic issue won’t understand. That’s O.K. because I am connected with those who do. ~ 1 Cor 1:3-4

A good read…. thanks 🙂 Like most of you my illnesses are invisible too. Although spend time with me and you can hear I’m sick. I get the dirty looks & comments like “excuse you”. People have no clue. And I’ve decided to not say sorry or excuse me to anyone anymore as I could be saying it hundreds of times everyday.

Thanks so much for this excellent post. I just found it this morning. It’s Sunday and I missed Church again, and went looking for some support. It’s so encouraging to read these many responses and find that so many expressed some of my very own feelings and thinking. Thank you to those who shared and help carry my burden.

The most difficult thing… having the will to go on living. Valley fever has interfered with my life for four months now. It’s taken just as long to be diagnosed. Having M.S. and being tortured by chronic pain in my left leg (had a total left hip replacement in 2008; have not been ‘right’ since), this most recent diagnosis is bringing me precariously close to the edge. I try to stay positive, and ask for God’s help every day. Please, Lord, just let me get out of bed in the morning. Even though my roommate (husband, for lack of a better word) is helpful, he has the T.V. on anywhere from five to eight hours a day… I live with this noise every day, since he started working from home. UGH! It’s constant, annoying and frustrating! I have to leave the house just to get some peace and quiet. Your prayers are much appreciated, and am grateful I have a forum to ‘air my stuff’. Thank you.

I know most of these comments were written a while back, but something that is really hitting me right now is chronic illness while being single. I see so many posts in different places where ladies can get through because of their great husbands or wonderfully supportive children or husbands with the support of their wives. I have neither (and never had). I was thinking of looking for an online support group for “sick and single”. Or starting one myself if I don’t find one. But I’m not sure if this is really a thought from God or just a pity party for myself. Any other single out there struggle with this? Would love to hear how you deal with the times when a spouse would really help, but there isn’t one.

diane,
I can truly identify with the struggle of dealing with physical, emotional, financial losses-not having a husband or adult children to hold you, listen, comfort, give validation of how tough and lonely it is. family, friends etc don’t know intense pain, the extreme effort to keep up the house, the difficulty of having to ask for financial help for food, gasoline to go to another doctor appt., medication and many other situations that arise outside of what disability pays. just to find someone to help fix something on the house without paying a bunch of money-which don’t have. I could go on and on. having mental illness just adds to the mountain of pain. the desire to give up, to pray God would let you go home to heaven, are frequent thoughts.
diane, be assured you are not alone, even though single.
may the love and comfort of Jesus enfold His caring arms around you.

I think right now at this very minute. This sucks, it feels like other people are living their lives and I am just stuck. I was invited to go worth my sisters to Las Vegas. Even if I could have gone in all this pain…….. I would still be lonely. Because I would have to take breaks and sit around either in pain or so our of it on
Medication I’m not really sure what is going on. I feel frozen. In three weeks I was able to work about three and a half days. The when. I come back people are like “did you enjoy your vacation” really vacation
The pain medicate makes me itch, I can’t take Tylenol pm to help me sleep my level functions are elevated. Menopause creeping up on me. Had breast cancer.
I not sure if I am depressed or just pissed off?

I know how you feel. Right now I know I’m invisible. It is I have been struck with lupus for over 30 some years. Along the way multiple hospital stays including14 surgeries. about 2-3 years ago I ended uo in that ugly wheelchair. I do a lot of arts and crafts and I decided to decorate my chair so it’s now fully decorated with rainbows and on the back says GOD BLESS AMERICA.. aS FAR AS the statement you look good and you feel like crud. I confess my answer sometimes I’m glad than you take the wheelchair and i’ll sit in that chair.. I know it’s not the best answer. I know it’s not the best answer but when it’s when I feel invisible. that’s when God says is that when God reminds me H is in control.
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People always asking what can I do to help. Take this pain away that’s what you can do. If not get out of my face.

I don’t say it but I sure feel it. I know they mean well,
The hardest thing.., every time something comes up that we went to do we can’t because of me.
There are so many hard things
The different doctors wanting to do these painful procedures, causes more pain or no relief…….

I haven’t commented in awhile as I haven’t been diagnosed with the underlying cause(s) of my pain, tiredness, lack of balance, illnesses, etc. So I have felt ashamed because I don’t even know if I belong in this website. Plus, I have borderline personality disorder which, for me, is comprised of depression, anxiety, panic attacks, OCD and PTSD. More shame! Two years ago, after I got out of the hospital for a suicide attempt, I tried talking to people at my church about my mental illness but have been “pinged” (aka ‘persona non grata’) and “dissed” (aka looked at, spoken about or ignored in a ‘dismissive’ way so that I am invisible to most people in my church). When people do ask how I am, many times their insensitive responses make me cry and I have to forgive them AND ask God to forgive me for being angry/bitter and to rid me of those feelings. When I awake in the morning, I immediately say my Scripture affirmations as I do my stretches so I move properly and helps with my perspective. I was thrown out of a ‘Christian’ psychiatrist’s office, which my husband thinks is because the “Dr.” perceived me as a risk instead of a human being! When this “Dr.” started talking in circles, I challenged her quietly and with conviction in my voice. God did not abandon me then nor will He ever! Likewise, He does not abandon His people – whether they are whole in body mind or spirit – or not. We, all of us here, have to keep looking up to the best Source of comfort, peace, love and Antidote to pain, loneliness, grief, shame, abandonment, etc. Thanks be to God for His grace (God’s redemptioon at Christ’s expense) and mercy!

I am African-American and the majority of black people don’t think that black people have mental illnesses. They just have to get it together basically. They also think that depression, anxiety disorder and PTSD means you’re crazy or insane. The other part is family and friends just don’t understand at all that I cannot work and they constantly give me things that I can do to work or go to school for money and I just can’t. I’ve been diagnosed with PTSD, major depression, panic and anxiety disorder, attention deficit disorder, and severe memory loss. I just wish someone understood that just because I’m not in physical pain or in a wheelchair, doesn’t mean that I am not disabled.